Tony Hillier worked for 13 or 14 years as a Prisoner Custody Officer in South Wales, transporting people to and from prison and court. One day, he injured his thumb when restraining a prisoner and from that moment he noticed his hand had started to shake. Even though he had surgery on his right thumb, his right hand continued to shake. After many tests no one could identify what was wrong. Until he was diagnosed with Parkinson’s in 2012 when he was 59 years old.
Given the nature of Tony’s job, he was told it would be impossible for him to keep up with any new training on how to control and restrain prisoners. It was upsetting for him at the time having to give up a job he had been doing for so many years. So in the same year as his diagnosis, Tony set up his own sports massage company. He had already completed his training and was doing some part-time work in this area before but it became his full time job for nine years until he retired just before the Covid pandemic in 2020.
Tony is convinced that treating other people’s injuries helped him, as his mind and body were constantly active. The tremor wasn’t an issue when working as a massage therapist. He told every patient about his Parkinson’s. Nobody complained and everyone was very kind.
Tony is a firm believer that exercise helps with managing his Parkinson’s symptoms and adding some fun to it is always a bonus. He thinks it’s also important to have a hobby or two to keep the mind and body as active as possible. He would urge everyone, if they can, to challenge themselves and push Parkinson’s to one side. Wood carving is his go-to hobby and he recently started making clocks. Even turning old vinyl records into clocks.
Tony and his wife Jill now volunteer and run the monthly Parkinson’s Support Group meeting in Longford, Neath as well as a more informal cafe-style Port Talbot “Cuppa and Chat” meeting in Port Talbot which was launched in 2022. They offer a range of activities in the group sessions but Tony reiterates that there’s no pressure to do anything or to get involved. They want everyone to feel comfortable. Just turning up and being there is enough.
Parkinson’s is a complex brain condition that gets worse over time. It’s the fastest growing neurological condition in the world, affecting 153,000 people in the UK and around 8,300 in Wales. It has more than 40 symptoms, from tremor and pain to anxiety, and there is currently no cure.
Tony said: “Whatever your circumstances, life is all about lessons that we must learn. Parkinson’s can be a tough teacher. My advice to anyone would be to never tap out even when life gets really difficult; if you get knocked down seven times, get up eight times and; adapt and overcome – always.”
“Support groups are invaluable to most people – whether they’re living with Parkinson’s or a family member or carer. They’re somewhere safe where no one sees people just for their Parkinson’s.
“On my journey with Parkinson’s there has been one constant – my wife Jill. I could never have achieved all I have without her at my side. Helping, encouraging, supporting. Worrying and probably shedding hidden tears. Parkinson’s has brought us closer, and has made us realise what is really important in life.”
Dawn McGuinness, Wales Community Development Manager at Parkinson’s UK Cymru said: “Around 8,300 people live with Parkinson’s in Wales so it’s vital for us to continue raising awareness of the condition and showing there is support available as we mark World Parkinson’s Day.
“There are more than 30 Parkinson’s UK Cymru local groups across Wales and we work closely with partners to offer a wide range of activities. As well as our community programmes, we offer support in all areas of Wales through our adviser service, we influence decision makers and support and run fundraising events. We can’t do it all without the support of amazing volunteers such as Tony and Jill and we’ll continue our work so people in all parts of Wales can continue to live well with Parkinson’s.”
